Tingling with sadness

9/5/16

These are the first notes I thought to write down a couple weeks after the diagnosis.

My body is tingling and my chest is heavy. Every song I hear on the radio has new significance, from the Hamilton soundtrack song "Push Away the Unimaginable" to John Mayer "Gravity, is working against me". Talia's body is so weak she is literally working against gravity, and she gradually losing the fight.

My natural inclination is to not make Talia laugh or teach her anything because it reminds me of the fact that she is a person, not a newborn. That this period of holding and cooing is not a temporary milestone on the way to further development

I have to remind myself that watching my children interact with Talia is a blessing and is building a part of their souls, and not building a burden that they will have to over come.I can't confront my emotions until after my other children are in bed, and I'm exhausted by that point anyway. David and I stare at each other across the dinner table and slog our way through until the house is quiet with sleeping children and then we can barely muster the energy to discuss the multiple terrible thoughts that had crossed our minds earlier that day.

Nathan said pre knowledge of diagnosis "I remember when Talia was born. I don't remember visiting Audrey, but I remember Talia" I hope that memory is always seen in a positive light and not through the pain to come.

How can I capture this in words?

8/20/16

How can I possibly capture the way I feel. How could anyone? I'm debating even trying to capture it in words. Who actually wants to read this? Would I be reading something like this, a story about a dying child and her loving family, if it hadn't hit me personally. The answer to that is, I probably would. I've always been drawn to tragic stories or stories that capture the unimaginable. I've always found catharsis in reading people’s personal struggles and the tiny triumphs they find within the worst of circumstances. I read, I cry and then I put down the story and then either feel smugly good about my own life or spend at least an hour trying to be a better person and not sweat the small stuff. How quickly life can change. Now I'm at the center of my own tragic story and I can't find it in myself to weep fully and get  to the catharsis point. Catharsis come at the end of the story perhaps, and I'm far from the end. I either spend my days avoiding looking at the end, or I'm quietly hopeful that the end will come right away and spare us all the middle section of suffering that is about to hit us. Live in the moment is my new mantra, don't look back at what life was-what my expectations for my family were, what my beliefs about the universe-but also don't look ahead, don't think about the decline that is to come, don't prepare for the imagined grief that is to come, because doing that brings my mind away from the now, and for now we are here, we are happy, we are alive.

My positive outlook on the world has always been one of my strongest attributes. I used to wonder why people couldn't just make a choice to be happy. Wake each day and decide that they would just do everything possible to be happy. Over the years I think I've learned that if that choice were so easy to make, then people would always choose that. Life is a struggle even in the best of circumstances. We can either look down, focus solely on our experience and sink under the weight of it or look around and see the commonality of all of our struggle and be uplifted by that. My life is going to include a struggle that is unimaginable in other people's worlds, but I refuse to sink. I'm finding a lot of song lyrics that speak to me in new ways. My current mantra comes from Dave Matthews "Celebrate, we will, for life is short but sweet for certain". and also from the musical Hamilton "Look around, Look around, how lucky we are to be alive right now."Can I still feel lucky after such an unlucky thing happened to me? After the odds of Talia having this specific disease we thought to be so minute? After I putting faith in a medical system to protect me and falling into the unlucky percentage of people for whom the system fails? --Well, I'm trying to still feel lucky, or at least grateful for what I do have. I have a kind husband who has been my perfect partner through ten years of marriage, one year of infertility, 12 years of medical training and three beautiful kids. He possesses a beautiful ability to be truly present in each moment while tackling hard times piece by piece. I have Nathan the embodiment of contentment, joy and whose generosity of spirit is unmatched by any other human being on the planet. I have Audrey to keep my life unpredictable and full of imagination. Watching her feel the music in her body and express it in dance reminds me the power that the Arts have to express things that words fail to capture.

Talia has always been a calm child who was happiest snuggled in my lap. The eyes are the window to the soul, so it’s said, and Talia's eyes have always sparkled and shone with light. Her eyes are the lightest of the family, the have always looked inquisitively around and understood things that her weak body wasn't able to confirm. They crinkle when she smile, they sparkle when she laughs, they penetrate my body to my deepest core.  The thought of those same eyes growing dimmer with each day is a thought that brings me infinite sorrow. While they are still shining I promise to take her on hikes and show her all different sorts of lights and shadows that exist in this beautiful world so the memory of those images will live in her long after she can no longer see at all.